Saturday, February 2, 2013

Update on Keith's progress.

As many of you know...

Keith received the gift of life on January 29th, 2013.  In a quiet evening and overnight, of reflection and anticipation, the gift was confirmed, and surgery began in the morning of the 29th.  The surgery took 7 1/2 hours.

Three hours post surgery, Keith was extremely pale, fully sedated, and breathing with the aid of a ventilator from his trach tube.  Having the trach, which he had received 3 days before (after a week on the ventilator) was a bonus as it meant that when he did wake up from the surgery, it would be an easier transition off the ventilator because if need be, he could be put back on with no need for intubation (through his mouth).  As I sat beside him for a brief time, and held his hand, and watched him resting, his chest rose and fell, in deep full breaths, and the magnitude of what had transpired hit me.  
Gratitude


There were new, donated, precious lungs in his chest.  They were alive.  Blood was travelling through them, oxygen was being converted to carbon dioxide and was ensuring that his body continued to function.  A team of brilliant, talented and caring surgeons, specialists, doctors, nurses, orderlies, physiotherapists, nutritionists, coordinators, psychologists and countless others - had made it happen.  My husband was right there, beside me, with warm hands and a strong body that I knew, was bound and determined to heal.  

The following day, (lets call it Day 1) Keith was woken up approximately 10:30.  It was my first look at him, in the eye, and when I did look at him, I knew that he knew.  It had happened, and he was still there.  While he wasn't smiling, he was still adjusting to a whole bunch of medication that keeps you pretty messed up for a while.   He had also regained his colour and looked like the man I know!  



Slowly, he began to get his bearings.  His neck was quite stiff from being in one position for so long, so his nurse and I were trying to encourage him to move his head left to right.  I was sitting on one side of the bed and encouraging him to look at me and move his head.  His first note to me at this point (as he still could not speak) was that I was "too short" for him to look down at me.  He's baaaaack!

He was quite tired, understandably, so Day 1 was spent encouraging him to breathe in a new way.  Pre-transplant, Keith's breathing was quick and shallow, as that is all his lungs would allow.  If you have been breathing a certain way for many years, your mind thinks that is how it has to breathe.  We need to teach his mind a new way of breathing.  Deep breath in...HOLD...full breath out - repeat.  I did my best to practice deep breathing with him for a while, however drifting in and out of sleep, combined with the beginnings of some hallucinations, made it a challenge.  He was still on the ventilator when I came in the morning, but was removed from it at 3:30 to allow him to begin to breathe on his own, through the trach tube.  When I left at 6:30, the nurse said he would likely be put back on it overnight to give him a break.  

Day 2 - 

I arrived at the hospital at 9:15 to hear that Keith had not only walked the ENTIRE floor of the ICU, but had been dancing in the aisles with the nurses.  People and doctors were commenting that he was doing exceptionally well for someone 2 days post transplant.  I know that he was just overjoyed to be able to walk, straight and tall, and flirt with nurses.  Did I mention he's back???  :)


I also learned that morning, that he had never been put back on the ventilator!  This was amazing news.     He had been on 32% oxygen overnight (which is 10% more than you and I take in) through the trach mask.  He had been breathing, on his own 24 hours after his operation.  

Day 2 was spent continuing to encourage him to do his breathing practice, lots of deep discussions with him about what a gift he had received, and additional interesting notes from him about the "goings on" in the hospital.  I wont go into detail here about some of the hallucinations that he was experiencing, that will be another blog post.  However, for those reading this who are waiting for transplant, be prepared.  Some pretty crazy stuff happens in your head.  Keith got frustrated at times when I could not understand what he was writing (because a lot of it made absolutely no sense) so I did my best to stay positive and keep him happy.  He rested a lot.  

Plasmapheresis

He also began to fiddle with his NG tube (feeding tube that was in his mouth, going directly to his stomach) and chew on it constantly.  No amount of telling him not to was helping.  He did NOT want it in there.  It was his only source of nutrition so imperative that it stay in until the doctors said it was okay for him to eat on his own.  

Once a day, Keith receives plasmapheresis. See the WIKI on the link under this photo.  Essentially, it is a transfusion to remove his blood, spin it to split the plasma from the blood cells, and reintroduce it with new plasma.  This is done because Keith has a high number of antibodies in his "original" blood.  He had multiple sessions of plasmapheresis during his 7 1/2 hour operation.  The process takes about 1 1/2 hours each time, and he will have it for 5 days post transplant.  




Day 3 - 

Keith had decided that he did not like the NG tube in his mouth, and had removed it overnight.  While it was lovely to be able to come in and kiss him properly, the nurse promptly inserted a new one so that he could get his feeds.  

He was extremely confused this morning.  Again, the hallucination post will be done when I can discuss it with Keith.  I certainly don't want to seem like I am "making fun" of this period of time.  While it can be amusing, the patient truly believes that these things are happening to him.  I had to manage it so that Keith knew that he could trust me, and that I would ensure that he was always safe.  I reassured him that everyone was taking great care of him, loved him, and only had his best interests at heart.  

We took him for a short walk today, but he was extremely tired and did not do any dancing, and had a tough time standing up.  He laid down for a nap mid day, and when he woke, he had removed his NG tube yet again.  The nurse was trying to get someone in to determine that his swallow reflex was strong, and that he could finally eat!  (and have a coffee)

By the middle of the day, he was more lucid, and we had a good discussion about where he was, why he was here, and how well he was doing.  He sipped a little on water and a small medicine cup of coffee!!!  The look in his eyes.  Wish I'd taken a picture of that.  

Day 4 - Eating and Talking!

Food - FINALLY!!!  
After a terrific nights sleep, Keith has had a great day so far.  He has had his trach tube reduced (yesterday) and can talk when he covers it with his finger.  He's a little breathy (think the Godfather, but without the threat of a cow head) but understandable if you are close to him.  

I took a chance and brought him up a Tims coffee this morning.  Worried it might be contraband, I covered it on my way in.  When the nurse gave me the OK, I showed it to Keith.  He was overjoyed.  We figured out that adding coffee to the liquid nutrition drink was the perfect high calorie, nutritionally sound "cappuccino", so we went for it.  

Shortly after his morning "meal" (the first food by mouth in 16 days) he went for a tremendous walk.  He walked the whole floor, waved to people, and smiled at all the ladies.  There are lots of ladies!  

We got back to his room and got him settled in his chair and early afternoon he was brought his first meal.  For someone who used to take 2 hours to eat a meal, he completely surprised me.  He was done in 10 minutes.  Absolutely blown away.  Watching him eat so quickly was absolutely incredible.  He was hungry!  

That brings us up to date.  I'm taking a breather, and he is having a nap.  Our continued blessings and thanks to the donor family.  

Sarah

11 comments:

  1. Amazing! So glad to hear that Keith is doing well! I feel like I know you both and feel very blessed that you have shared your story with me! Continued prayers that healing and recovery is speedy!

    ReplyDelete
  2. absolutely amazing. sending quick recovery thoughts your way, xo

    ReplyDelete
  3. Wonderful. Glad to see such progress in under a week. He is determined. See, his angels heard us and are helping him along. Another 6 months and He'll be running in the Toronto Marathon, right??? Such blessings are happening to him. Love and Light.

    ReplyDelete
  4. So very happy for you both Sarah! it is such a wonderful and precious gift, this Organ Donation business. I'm confident Keith will be a good steward for his Donor's gift for many years to come!
    The little pleasures we take for granted - such as wanting to eat, then doing it unimpeded; sipping on a cup of java; talking a walk; brushing our teeth; just putting on our shoes - become such an exhausting chore as lung disease progress. It is exhausting for the patient and excruciatingly painful for those of us in the role of support person.
    Never forget the incredible strength you have together!
    Hugs

    ReplyDelete
  5. So very happy for you both Sarah! it is such a wonderful and precious gift, this Organ Donation business. I'm confident Keith will be a good steward of his Donor's gift for many years to come!
    The little pleasures we take for granted - such as wanting to eat, then doing it unimpeded; sipping on a cup of java; taking a walk; brushing our teeth; just putting on our shoes - become such an exhausting chore as lung disease progresses. It is exhausting for the patient and excruciatingly painful to watch for those of us in the role of support person.
    Never forget the incredible strength you have together!
    Hugs

    ReplyDelete
  6. Thank you Sarah for sharing this beautiful journey you and Keith are taking together,as awful as this has been.He is doing so well. For someone like me that will be going through this ,it makes me calm and accepting of the whole process.I understand it doesn't always trun out this well but it is nice to know about the good news stories.Sending healing prayers xoxoxo Donna

    ReplyDelete
  7. Awesome! Thanks for sharing. So glad to hear all is going well.

    ReplyDelete
  8. So happy for you both and your family. I think it's great that Keith is doing so well.

    ReplyDelete
  9. Such wonderful news! The 'magnitude of what has transpired' is truly awe-inspiring. It is great to hear that each day you can both breathe a little easier.

    ReplyDelete
  10. Hooray! Such wonderful news. Keep on fighting!

    ReplyDelete
  11. Hello!
    Great news - so happy for you! I was in Florida and saw it on the TV News - i believe in miracles now ! Thank you so much for sharing your journey with me . Good luck to you always. Keep in touch .
    lots of Love,
    Carole

    ReplyDelete